Chronic Lyme disease has been banished as a disease!
No conventional or alternative treatments are recommended!
Doctors cannot make a clinical diagnosis anymore!
This is a pivotal moment in the history of Lyme disease.
It is time for patients to fight back!
This protest is part of a national agenda to get back control of our treatment and our lives.
Your participation is critical!
Your participation is critical!
Your participation is critical!
Patients are already being denied coverage. Doctors are backing off treating. There is no room for clinical experience with the new guidelines.
This insidious disease is devastating the lives of children, families and our communities, while much of the medical establishment continues to deny the severity of this public health crisis.
The Infectious Disease Society of America has released a new set of reckless guidelines that will IMMEDIATELY impact all of us.
Ruled by a few:
14 IDSA committee members created these new guidelines
14 IDSA committee members and the IDSA board were the only ones to vote & approve guidelines
Patients and treating physicians were denied input into guidelines.
This small group holds our health and lives in their hands.
Guidelines impact:
Diagnosis is no longer clinical but rather only by CDC positive surveillance blood test or EM rash,
Will miss 50% of Lyme cases leading to the potential for severe debilitating chronic disease.
Insurance companies will be empowered to deny coverage.
State medical boards have strong basis to prosecute our doctors.
School districts may utilize guidelines to not address special needs of students with chronic Lyme.
Child protective Agencies may file inappropriate charges in custody cases.
We need to hold the IDSA responsible and accountable and let the world know what they are doing.
New York Medical College/Westchester Medical Center is home to three of the IDSA committee members we will not quietly tolerate them harboring this group.
What you need to do!
Show up ~ Numbers count!
Bring family and friends.
If to far/ill to attend see website (Lymenews.org) to help with other protest efforts.
Print out and distribute attached flyer at your local doctor's offices, grocery stores, libraries etc.
I could not locate the section of the website that tells how we can support from home. What should I click on to find that info?
Thanks, Suzy
Posted by Areneli (Member # 6740) on :
Somebody wrote not long ago that there is one LLMD who believes that the New Guidelines are so bad because authors were misinformed about true situation of Lyme sufferers.
This can be remedied as Dr Wormser clearly provides his contact info on the Guidelines.
If you write, please don’t forget to ask him for forwarding of your letter to other members of the Lyme IDSA committee that created the Guidelines.
Posted by Lymeblue (Member # 6897) on :
Ok....all together....not only the protest but an investigation opened already..hmmmmmm
"Connecticut State Attorney General Richard Blumenthal for beginning an investigation into the Infectious Diseases Society of America (IDSA) Lyme disease guidelines development process. In an unprecedented move, the Attorney General's office filed a Civil Investigative Demand "
Attacking the "bugs" from different angles....
Posted by Lymeblue (Member # 6897) on :
I hope I can represent there my "state", no matter how far I have to go or how cold the weather might be..thanks to good LLMDS I can endure many " physical adversities"....
Posted by Tincup (Member # 5829) on :
Happy days are here again
The skys above are clear again
Let us sing a song of cheer again
HAPPY DAYS ARE HERE AGAIN!
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May I have this dance?
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Yes.. a one, two, three punch a roo.. right in the nose!
It's about time somebody said enough is enough!
Thanks to all who worked so hard to make this happen!!!
up to the top again
Posted by kelmo (Member # 8797) on :
Wrote him. Thanked him. Thank God
Posted by lymemomtooo (Member # 5396) on :
Hey TC save a dance for lymie..See you on the 30th..Let's rock!
Be there or be square. Posted by lymemomtooo (Member # 5396) on :
sorry got carried away with the edit button..
Posted by Starphoenix (Member # 2402) on :
I will so freakin' be there! I'll be the crazy woman yelling out on the bus: "Who here is from LymeNet?" I'll be thrilled to meet my Lymie friends in person! I'll be thrilled to put faces with names! I'll be thrilled to be a part of this protest!
Starry Steph
Posted by DR. Wiseass (Member # 6777) on :
I'll be the one with a lime green cowgirl hat and if the paint & rhinestones adhere...I'll be wearing me some fancy lime green cowgirl boots, too! You can call me the Rhinestone Cowgirl!
YYEEEEEEEEEEEEEEE HAAAAAAAAAAW !!!
Yep! I'll be the one looking like a lime freak!
THIS IS THE BIG ONE FOLKS!
Be there or be insanely jealous! (But keep in mind -- you jealous ones will have activities to help you feel very involved too! You WILL be needed. Stand by for further instructons.)
HUGS & Posted by kelmo (Member # 8797) on :
For those of us who can't make it, we look forward to being a support. Let us know what else we can do.
Posted by trueblue (Member # 7348) on :
quote:Originally posted by Lymeblue: I hope I can represent there my "state", no matter how far I have to go or how cold the weather might be..thanks to good LLMDS I can endure many " physical adversities"....
Blue, have you found a way to make this doable? I really wanna go but I haven't found a way to get there that I can afford, right now.
I'll do what I can from here but wish I'd be there instead.
Posted by heiwalove (Member # 6467) on :
i'll be there for sure!!
~heather
Posted by Tincup (Member # 5829) on :
If you appreciate the work that folks have been doing behind the scenes...
Please let them know.
They have made more progress in the past 6 months than I've seen in the past 20 years.
To all of you emailing YOUR state and federal senators and house of reps, please use this link right above my typing.
It's these 20 states that we all worked on this summer ok!
Thank you so much! In order
colorado florida georgia illinois iowa massachusetts michigan nebraska new jersey new mexico new york nevada ohio oregon north carolina south carolina tennessee utah vermont virgina
TINCUP, would you copy these 20 states and paste them in your 1st post on your ABOVE link here,
and post them at the top of your post so it's clear at a glance which states ARE DONE! a big thank you TC Posted by ldfighter (Member # 9405) on :
There's a "Ride & Cost Sharing" page on the rally website. If transportation and/or cost is a factor, check it out!
And look on the left side... and click on- Rides and Cost Sharing.
They have a space for folks to post for rides .. give and take.
Posted by Mo (Member # 2863) on :
see you all there! this is the BIG one!!
mo
Posted by lymemomtooo (Member # 5396) on :
UP
Posted by Mo (Member # 2863) on :
care to be there!
Posted by bettyg (Member # 6147) on :
a friendly reminder for Tincup, would you please do this for me/others by placing this at the top of YOUR ORIGINAL post asking for the 50 states info on federal/state senators and house of reps in DC plus their own states!
Many haven't emailed yet, and knowing which states are done, will help all by reading the ALPHABETICAL STATE LIST I typed up below. Thanks Tincup!
To all of you emailing YOUR state and federal senators and house of reps, please use this link right above my typing.
It's these 20 states that we all worked on this summer ok!
Thank you so much! In order
colorado florida georgia illinois iowa massachusetts michigan nebraska new jersey new mexico new york nevada ohio oregon north carolina south carolina tennessee utah vermont virgina
TINCUP, would you copy these 20 states and paste them in your 1st post on your ABOVE link here,
and post them at the top of your post so it's clear at a glance which states ARE DONE! a big thank you TC .....
Posted by Cobweb (Member # 10053) on :
Can I make a sign for the rally like this:
IDSA PROVES there is no vaccine against STUPIDITY!
Posted by Truthfinder (Member # 8512) on :
Wow, this is just terrific, and you folks are just amazing. I SO wish I could be there - well, I'll be with you in spirit.
And my hat is off to the Connecticut AG - somebody with clout finally had the guts to say, "Hey wait just a darned minute.... let's be sure about this before we blindly follow along."
WOW.
Tracy
Posted by Mo (Member # 2863) on :
if you can't go, click on the website and donate if you can in lieu of support.
if you CAN go, email the contact on the site to let them know how many will be coming.
Lia is getting a barage of emails from folks who can't go to the rally who have ideas or questions.
she asks that ideas be posted through the website, and that contacts to her direct email be regarding who is COMING and has questions.
remember, the organizers of this rally have Lyme too. let's remember to keep it simple for them as well so the event can be organized as well as possible!
please, please come from far and wide!! you will never regret it. things are HOT to trot in LymeLand right now! now's your chance to make national impact by coming to ny to confront the WORM(S).
mo
Posted by Tincup (Member # 5829) on :
BettyG..
You are too fast for me!
Ok.. you said.. "TINCUP, would you copy these 20 states and paste them in your 1st post on your ABOVE link here, and post them at the top of your post so it's clear at a glance which states ARE DONE!"
I am sorry I am not following your request... confused? BUT... If you are wanting that info you posted.... in the top post that I posted here.. well, no.
Pretty blunt.. HA! Sorry.
This post is about the protest and I would like to keep that the main focus.. or otherwise I confuse myself. (NOT hard to do)
If we need another post about what you are asking.. which I am STILL not sure what it is...
I'll be happy to start a new one.. or you can.
Now.. if I've missed your meaning all together.. SORRY! I am trying!!! So splane it to me!
Posted by bettyg (Member # 6147) on :
Tincup, my apologies; I'm talking about your CONTACT 50 STATES post in ACTIVISM. This is the link,
By copying the 20 states there in YOUR post you started, that info could be used also for YOUR PROTEST thread here where you are wanting folks to email their FEDERAL/STATE reps and senators.
We worked so many hours on that project, I'd like to see folks utilitize it that were not here when you began that project too for things bigger LIKE ALL THE HAPPENIGNS WITH LDA, IDSA GUIDELINES, etc.
Sorry, I hijacked your post. My apologies TC.
Now, back to PROTEST info.....NOV. 30 is closer!
Posted by Mo (Member # 2863) on :
BE THERE NOVEMBER 30th !!!
we know it's cold, but this MUST take place now, under the circumstances!
i understand there will be plans for warmth, including this:
Posted by FightFireWithWater (Member # 5781) on :
Right now, weather.com forcasts 54 degrees F. with 60 % chance of showers for Vall. on Thurs. Nov 30.
Forcasts this far ahead are not nearly as accurate as those 5 days ahead, so keep tuned.
For those taking the train from NYC, still another option, (and more expensive) might be to get off at the White Plains train station where there is a taxi stand, and going to the protest gathering from there. Come with a couple of friends and you can split the fare!
Posted by Tincup (Member # 5829) on :
And I heard there are going to be some VERY cool guest speakers there. Gotta come see them!
By the way.. bring the kids. They will be making a HUGE contribution for other children who can't be there to help themselves... and will also be able to tell their grandkids THEY were at the big protest that made the history books.
Posted by Mo (Member # 2863) on :
we'll be there.
the potential is high that my illustrious son will be too (the first Lyme event he has been able to come to, aside from Doc J's B'day party)
mo Posted by Robin123 (Member # 9197) on :
The Lymenuts CD song hits site has come up with close to 100 song verses by now about Lyme and coinfections. Am wondering if you want to look at the site to see if there's anything you might want to copy off for folks to sing at the NY rally. Songlist is summarized on pg 9, plus there are more songs on pgs 9/10 too, including some rousing verses of The ticks go marching one by one, etc, that would be cute with some bass drums.
Posted by ldfighter (Member # 9405) on :
I went to org site, and this was 2nd time I tried email LIA there, and both times my email was REJECTED!
I was going to say there is NO WAY of knowing what was updated, added, or changed from what I saw.
2nd thing, the timesnewroman runs all words TOGETHER for many of us, like me. I suggested changing the front page to ARIAL, 14 pitch for LOW vision folks like myself.
It's easier to print things in ARILA, 14 PITCH to use for directions, and other important stuff. FYI in case you are Lia, or can tell her this.
I suggested she show ** UPDATED/ADDED to whatever changed so everyone can find this EASILY; it isn't now. Posted by Mo (Member # 2863) on :
THERE ARE OPNLY 150 PEOPLE SIGNED UP AT THE LYME RIGHTS SIGHT TO GO !!!?
THIS IS THE MOST CRITICAL EVENT TO OCCUR IN ALL THE YEARS I HAVE BEEN HERE!
IF WE ALL DO NOT MAKE EVERY HUMANLY FEASABLE EFFORT TO GO, THE IDSA WILL WIN.
NOONE HERE EXPRESSING ANGUISH OVER THE SUFFERING WE AND THE CHILDREN HAVE FACED RELATED TO THIS DISEASE CAN AFFORD *N O T* TO BE THERE!!!!
PLEASE SIGN UP AND MAKE YOUR PLANS TO COME.
I KNOW TRAVEL IS DIFFICULT, I KNOW IT IS COLD (THO THE FORECAST FOR THE 30TH - fyi -actually -IS MILD)
I KNOW IT IS THE HOLIDAY SEASON, BUT THIS IS WHEN THE GUIDELINES HAVE COME OUT. THIS TIMING CANNOT BE DELAYED!!
(my family is facing great hardship now, but we are going)
LOOK --
IF THESE GUIDELINES ARE NOT ROUUDLY OPPOSED IN GREAT NUMBERS VIA BODIES PRESENT, ALL OUR DAY-TO-DAY-LIVES WILL BE DRASTICALLY EFFECTED IN A SIGNIFICANTLY NEGATIVE WAY.
i have been here a long time, and have heard every chronic sufferer voice their frustrations at the system that opressesd the recognition and treatment of Lyme disease.
ALL of those people effected should be driving, flying, bussing to face off with the IDSA.
we need to see the attendance numbers grow ten times over.
COME!!!!! this is the time to act and be heard.
if you don't, then you are sending a message of acceptance of the crimes of Lyme.
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Go blue!![[Wink]](wink.gif)
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mo
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